It’s just, the pain, the pain just affects me as a whole, it affects everything I do and say. And sometimes I have to apologise to my husband because I get snappy and there is no reason for me to snap at him. But you know hell say ‘Ooh, you know are you grumpy today’ or…

And I have got to a point now when I say ‘Yes, I am. The pain is making me grumpy’ whereas before I go ‘Don’t call me grumpy and I’m not grumpy’ and try to make excuses whereas having gone through counselling, it’s sort of very easy for me to say ‘Yes, I’m sorry I’m grumpy. I shouldn’t have snapped at you. I am grumpy.

And my husband said something to me the other day, I was in quite a lot of pain from my whiplash and he took me out and on our way out. It was actually on the way to work we went on the train and we spent the time together on the train and he looked at me, he didn’t say anything to me for quite a while because I had been really grumpy that morning and then when we got to the station where we part ways.

He said ‘Goodness but you’ve, he said that he must be Snow White because I had been every one of the Seven Dwarfs that morning because I had been happy, I had said something funny, then I had said something sensible and the next minute I was snapping, and then I was tired and saying just…

And that kind of put everything into perspective that pain is like I was being all the Seven Dwarfs at one time. It is just something that you have to learn control. And the tendency to express all of those things to the person that you live with and rely on and talk to and trust is, they are there, they want to support you.

So… but then I feel that I’m, that’s the only person whose there for me to talk to. So whenever I do see him, and he works long hours, then I want to tell him about all the pain issues I had that day and what was horrible and. And then I sort of look back and think well the only quality time we had together I was telling him about the bad part of my week, or the bad part of my day and the pain I am in, because you don’t just go up to any acquaintance and friend and say ‘I am in so much pain and this and that.

So the counselling again comes in because I go once a week and it’s another place for me just to go and rant and rave about being in pain and the frustration and everything which makes my quality time with my husband a lot more sort of positive. Not just positive, just worthwhile because then I can try and focus on other things because I have had my chance to let off steam, because letting off steam is very important.

But when you think about it if you are letting off steam with the same person day in and day out, they are going to get tired of it. I think I would get tired of it. So it’s trying to strike a balance is also very difficult. Sometimes I have to just shut my mouth when I am in pain. I wake up and I just want to groan as I roll over and I think ‘Ooh he doesn’t want me to hear me groan again’ and I have to just keep quiet.

I get ratty. I do find I get ratty and my husband says I get very ratty. If I’m in a lot of pain, I can get very sharp and very short and I don’t recognise that my pain has got worse. That’s one thing, and I accept when my husband says ‘You’re in pain, you’re ratty’ because I’m not a ratty person ‘You’re ratty, you’re sharp, you’re very off, you must be in a lot of pain’ and instead I will accept that.

I will apologise rather than saying ‘No I’m not, I’m fine. Theres no point in that. I accept that and I’ll say and I trust my husband and ‘I’m sorry’ obviously and I’ll go and rest and I’ve warned some people at college that if I start getting ratty it means I’m in pain, because, I don’t know. Which is very strange, isn’t it?

It was about, I know my wife works extraordinarily hard and when she comes back after, her routines day is 10 hours but very often she works you know shell leave at 6 o’clock in the morning and not come back till 2 o’clock the next morning. Hard physical labour, managing/directing, doing all the physical and mental work for their, shes exhausted because she does that sort of on a daily basis it is very demanding job, it’s a business outside catering and she is the business. And does all the intellectual work and also has to cook and do the physical work as well, although shes got a lot of people work for her it’s extraordinarily demanding and when she comes back she, she doesn’t want to have to cope with a husband in pain, you know.

She needs rest, you know, and then I’m not a very good cook and I’m not a very good housekeeper but shes the one doing all the work and yet she, and she naturally expects that the house is going to be tidy when she comes back. Well housework is physically painful and I don’t enjoy it anyway. Stooping over a stove is physically painful and I don’t enjoy it anyway. I’m not a cook, you know, and so being, both of us have been forced into situation that we didn’t want. She didn’t want to be the breadwinner and I don’t want to be a househusband.

And this has all come about through this wretched bloody condition. And so it creates enormous stresses for her and enormous stresses for me in both things and you get into situations where I frankly don’t want to feel, I don’t feel like moving but then I feel guilty because I know shes been working ten times harder than I have all day long and she needs a meal set in front of her when she comes home and I just, you know, I don’t want to lift a finger and so it’s problematic.

But then the other issues sort of relating to that really is relationships because to meet somebody who would accept and understand that I have a bad back that can dictate to me things that I can and can’t do and who would be understanding and okay with that isn’t easy.

You know I went out with one person and he just found it really hard. He kept saying to me ‘Be positive and I know people are trying to be really upbeat about it, but theres a difference between being positive and being realistic. People see me as being realistic as being negative and it’s not. It’s just that I now know my limitations. You know, when you don’t go out to places where people normally meet partners. You know it gets very, very difficult.

Relationship in general…. Yes I think the worst time was when I very first became ill, I was actually going out with someone at the time, so wed been together 2 years before, both teenagers, so we were very sort of much in love at the time and then for this to suddenly happen, when you’re that young is something that’s so hard to get your head round, and for him it was very, very difficult, to see me suddenly fall to pieces and to be so physically sort of unable, but what I think he found was how emotionally I was affected and how I found it so hard to get on with things at the beginning.

In the end that relationship had to dissolve because we were just destroying each other through wanting to get back to where we were. Whereas relationships I’ve had since I’ve been ill, the guys have only ever known me in this situation, so again its that they accept you the way you are and you’ve got nothing to compare it with, and yes there can be difficulties, there can be a lot of frustration.

And the fact that one time I booked holiday, we booked a holiday to Spain, and I really flared up a week before and we couldn’t go, so we had to just cancel it, and that makes me feel guilty because like he had taken time off work and it was all planned and some people react to that better than others, I mean he was absolutely fine, it was well just book it for another time, we can get the money back its not a problem.

But that can put strain on a relationship, the fact that you can’t really make many plans when you’re in chronic pain, because you don’t know how you’re going to feel the next day, you can book to go to the theatre in 3 months time, and then when 3 months comes you might not be able to go, so you’ve got to be incredibly flexible.

So you need to be with someone who is flexible and understands how your condition works, its very important to be very open, very honest, to communicate all the time, to say ‘Look I can’t do that can you help?’ , but also not to abuse somebody by sort of letting them run round after you all the time, because obviously you mustn’t let any resentment build up what so ever between you because that can block communication.

And one really good bit of advice I was always given is to make sure that both of you have someone outside the relationship to talk to, because its so unrealistic to think that you can handle it completely on your own, its going to get to one of you at sometime and its very important that the person who’s healthy in the relationship has got someone they can go to scream to say ‘I can’t cope with this at the moment, you know she needs so much help, you know shes really depressed’ or you know just to take it out on somebody else and then you’re not taking it out on each other, because that’s when all the guilt comes in and one of you might shut down, that is really, really important, that would be the best bit of advice I’ve ever been given. And if you put that into practice it works very well.

I know it’s quite funny actually because when I made the video I wanted to include sex. I don’t mean I wanted to include sex, but I wanted to mention sex on it and the physiotherapist said ‘Oh that’s a subject that not a lot of people want to talk about’ and of course they don’t you know. But they often do quietly and it’s something they do want to talk about and there are quite a lot, theres quite, actually theres quite a lot on my website about it because there is a good book about back pain and sex.

Of course it does affect your sex life, you can, theres… I don’t want to go into a lot of detail there, of course there are lots of positions that you can use where, you know, it doesn’t put extra strain on your back or just refrain and cuddle. I mean, you know, full sex life, yeah of course it’s important but it’s just as important to have the company of somebody, you know, cuddling and things like that are often more important and you know when you feel ready for it, you know, I suppose I liken it to when you’ve had a baby.

You know, you’ve had a baby and the last thing on your mind is sex. It doesn’t mean to say you don’t love your husband because you do and you know but you’ve got this little baby and the thought of having sex after just having a baby is the last thing on your mind. And it’s the same thing, you know, with, in fact I can remember as it happens going back a long, long time ago, and I’d had an operation and after one operation I was feeling quite sorry for myself and then all of a sudden you know I snapped out of it and I thought ‘I’ve had enough of this feeling sorry for myself and I snapped out of it.

And we were actually just sort of lying, you know, on the floor and it was just quite funny and all of a sudden it just becomes quite natural again because I think, you know, I was frightened that I was going to break my back and things like that, but I must admit at the time I didn’t read any books at all. It just, it’s like anything you know once you’ve, once you do it again and it doesn’t hurt, you think ‘Oh it’s okay to pursue it.

I always, yeah, this is one I did an interview years ago with… on radio, this one came up, it’s sort of sex and pain, how does it work out? And, I don’t if you’ve ever seen that the thing I’d put on a t-shirt ‘Pain sufferers do it gently. And I don’t think really pain it is a problem, sex when you, to have sex, or have an intimate relationship when you’ve got pain, it’s just like anything, you’re thinking ‘How the hell can I do this?’

But it’s like anything, if you do some stretching, seems a bit unromantic, but you’ve got to think it through. We just have to do things a little bit different than I suppose the normal bods. Where normal bods, they’re just sort of thinking, get a bit hot and sweaty and think ‘Hey come on baby, lets go’, you know. Whereas we have to say, we have to think about, think it through first, well, you know do a bit of stretching, you know before you get into that sort of stuff and I think it might seem a bit unromantic, well do some stretching afterwards as well.

It’s part of self-management, you know, it’s, you know it’s like getting into the bath really. You take your clothes off, you get in the bath, you get out, you dry yourself and you put, it’s the same thing, you know, you’re preparing yourself to get into a bath. If you’re going to have some sex, not some sex, you’re going to do, making love things like that, you’ve got to prepare yourself before and after. But you just work out different positions on how you’re going to do it and I think the best thing really is to, is to talk it through with your partner and it’s no good saying ‘Look, this is what I can do, these are the things I find difficult’ but say ‘Look, you know, can we try things a different way.

I don’t swing from the chandeliers like I used to, I don’t jump off the wardrobe like I used to. But you just find, I don’t know make it a little bit humorous, never did swing from the chandeliers either. But you just find, you just talk it through with your partner I think, if you’ve got a good relationship with your partner, you just talk it through, say look ‘If we do this, then how’s that?’ And then talk and you know, sounds really unromantic, bit clinical, but have a bit of a debrief afterwards and say ‘Look, was that okay?’ It’s no good doing something with your partner if they don’t find it, it pleasing.

At the end of the day, you know, say am I having sex or am I making love? I like to think that were making love, you know, and making love is thinking of your partner, you know, in my case my partner has pain as well, so we have to be, we just talk it through and are very honest with each other like, you know.

Sex life. Yes it does it definitely does, with fibromyalgia, its all the soft muscle, all the soft all the smooth muscle in your body that’s affected and that can include like your cervix and things like that, so it can make sexual intercourse quite painful, which obviously both of you need to appreciate and work with.

You’re going to get tired, you’re going to be in pain, you need to choose the best part of the day to be intimate, where I’m most awake my pain killers are working properly and I’m in the mood basically, where obviously if you’re very tired, in lots of pain, nobody particularly wants to make love in those sort of circumstances.

So again its this honest open communication, it does reduce your spontaneity you can’t necessarily always think right lets go off into a wood and make passionate love, because you’re not going to be in a situation to be able to, so you might have to plan a bit more, say like well have this evening together and make it really romantic and well make sure that I’ve rested in the afternoon and I’ve got all my energy to give to you then, so it comes down to pacing, it comes down to being organised.

Obviously you can be impulsive from time to time, but you’ve got to take it the way it comes, and the person you’re with has to understand what situation you are in, has to understand the reality of it, but if they love you, they just accept it and its absolutely fine, so that is how I deal with that.